Why get a diagnosis

[Alicejackson40]

Hello

My 83 yr old mum has undiagnosed dementia but it’s pretty obvious to us what’s been declining for years.

My question is, is there a benefit to a diagnosis. Surely if there’s no cure then it’s how to manage the future not treat it?

Any advice would help please.

Thank you

Alice

 

[Izzy]

Welcome to the forum. You’ll get lots of understanding and support here.

I wanted a diagnosis for my husband has I knew that was the only way he would any available medication. It also allowed me to get benefits for him - such as attendance allowance. He was diagnosed with Alzheimer’s and as a result was prescribed Donepezil.

I wondered if this factsheet would be of any interest -

Benefits of getting a dementia diagnosis

Finding the reason for any changes you’re experiencing can help you to get the right treatment and support.

www.alzheimers.org.uk

 

[jaymor]

Welcome to the forum @Alicejackson40 .

A diagnosis will help going forward. No it won’t cure but it will open doors, though they may need a bit of a push, for help in managing it.

There is medication that can alleviate some of the symptoms experienced by someone with dementia making life just that bit better for them and those who are caring for them.

Attendance allowance would be available, not a fortune but helpful. If your mum lives alone then she would qualify for exemption of paying her council tax, if someone is living with her then there would be a disregard of 25% of the council tax. It all helps with the added expenses when dementia is present in your life.

I’m sure you will find the forum helpful and the members willing to pass on their experiences to help you.

 

[Starting on a journey]

For me it’s the medication that can be prescribed by the mental health consultant. I wasn’t far from seeking a care home for my mum but once diagnosed and on medication she has become much more manageable and nearly three years on she is not ready for care yet.
My mum in law wasn’t diagnosed, she got it late in life 94…. Again medication would have helped, my sister in law went through hell with an anxious, crying mum. This could in my opinion been avoided for quite some time. She is now in a home, on medication and much less anxious.
Just my opinion….once you have a diagnosis you need never mention it to mum again!!

 

[Jaded'n'faded]

If you have to deal with Social Services at any point, it will help to have a diagnosis. My mum was self funding so I didn't involve them but when I moved mum to a care home they had to apply for a DoLS as she kept trying to escape...

So SS had to be involved. A temporary DoLS was granted but mum was undiagnosed at the time and that made it much more difficult. I managed to get her diagnosed about 6 months later and SS then accepted that she needed to stay in the home.

 

[canary]

My OH is undiagnosed. He is reaching the stage where he needs much more help, but it is difficult to access it because many facilities that would be suitable for him stipulate that they are only available for people with dementia - if you dont have a diagnosis then thats that. There is a brilliant dementia hub very close by with all sorts of activities and facilities for both the person with dementia and their carer, but we cant access it. I am having trouble finding somewhere for respite as he is now too advanced for a residential home, but ones that would be suitable will not accept him. I tried to get him into day care, but the same problem. Whenever he ends up in hospital I am not allowed to go with him, even though I would be able to if he were diagnosed with dementia and the dementia matron will not talk to me because he doesnt have dementia. It has caused so many problems because the doctors are not getting accurate history from him and no-one thinks to contact me.

I expect this all seems a long way away and irrelevant to you, but, believe me, it will come around quickly enough and it can take time to get a diagnosis.

 

[SERENA50]

Sometimes I think what would change with a diagnosis? We have an appointment in May after a long waiting period and various other things that have been held up during the last two years of the pandemic. We have stood our ground as we know that normal ageing happens but this is not normal ageing and for a long time Dad looked fine and only someone who knew him really well would notice. Things have progressed and gradually so, to the point now where he isn't able to look after himself properly and without a diagnosis sometimes it feels like the outside agencies like doctors for example think we are fussing over nothing. Dad will say he is fine for his age. It isn't true. Hopefully the neurologist will tell us what is going on. Dad probably won't fully comprehend but for us it will mean that when we come to involve outside help of any kind we can say this is what is happening. At the moment we feel powerless almost. At the very least we feel that we will know what we are dealing with and we can make plans as a family. There is no cure , maybe medication but that doesn't mean people cannot live well with support and that is what we would like for Dad to live as well as he can with the support he needs for as long as he needs and wants it.